Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
An ounce of prevention…
September is Fall Prevention Awareness Month and was the subject of our Wellness Hour. Falls are the second most common cause of injury leading to death. For a person with FSHD, falling and breaking a bone may be the incident that leads to becoming reliant on a wheelchair. That’s because it’s much harder for FSHD…
The FSHD Society Celebrates Fulcrum’s Milestone in the Fight Against FSHD
Fulcrum Therapeutics has announced successful completion of patient enrollment in REACH Phase 3 trial The FSHD Society is thrilled to announce a significant milestone in the battle against FSHD. Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a pioneering biopharmaceutical company focused on…
Upcoming Events
Featured
Women on Wellness – Adaptive cooking
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Adaptive cooking and adaptive eating will be our topic this month. We'd like to share different ways of cooking and/or providing the necessary nutrients we need daily. Come and join us! This is our mutual...
New England Walk & Roll
Optum Building Rooftop 1325 Boylston Street, Boston, MA, United StatesNew England Walk & Roll Saturday, October 7, 2023 11:00am Check In Optum Roofdeck, 1325 Boylston St., Boston MA 02215 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art...
Wellness Hour on Emergency Preparedness
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of how it's important to be prepared for emergencies. Having a disability requires extra planning. Our guest this month is Laura Jull, MEd, who began her...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.